Just wondering if i am all alone here

webbuster
0 Recommendations

Dear Friends,
I have been a member for several months and have not chatted often because I am very different in someways and not so in others. I have a very rare bone disease that I have had since birth and found out on top of that I have osteo. I was told I have osteo in 2003 and I am 48. I was wondering if anyone else here has my bone disease which fibrosis dsyplasia. I have this in 12 long bones so I have a unique problem with exercise. My scans were -3 and -3.5 in 2003 but have gotten better I have been on Actonel since then. Just wondering if anyone else is in the same boat. At least you guys know some of how I feel. Stay well and healthy.
Love Nancy

2 replies

jennielynn

Hi Nancy,
I am not familar with fibrosis dsyplasia. I was diagnosed with osteo when i was 40(i just turned 50) but the doctors are sure i had it in my early 30's, hereditary. My numbers are very very bad. I just had back surgery..
I am going to the Helen Hayes osteo center in ny in august. Maybe they can help you with the exercising. they are online so you can get info from there. I see you ae from suffolk as well. I beleive the center is near rockland county.

feel good.

webbuster

Thank you for you reply fibrosis dsyplasia is a bone disease when your bone marrow turns to fiber and also your bone. I was diagnosed at 14 but probably had it since birth. I really dont know what it is like to have good bones. But I am doing well. The national institute of health has a good website for research.My bone disease it seems there are about 150,000 in known cases and all but 3% have it in one bone. I have it in 12 so I am very special. It would be ok not to be so special lol.Thank you so much for the info. Take care and stay well

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